Cynthia’s Story

To: The Medical Community of the United States

With Permission from Cynthia Toussaint

Stop the bias which prevents the ethical and equal treatment of women with chronic pain diseases…now.

Women in this country have for years suffered from a destructive bias and prejudice by the medical establishment when it comes to the assessment and treatment of their chronic pain conditions.

All too often, their pain reports are discounted as “emotional”, psychogenic or “all in their head”, and therefore, not real. Women for their complaints of chronic pain are often prescribed sedatives to “calm their nerves” while their male counterparts are prescribed painkillers.

Multiple studies support the fact that while women are more likely to seek treatment for their chronic pain, they are also more likely to be inadequately treated by health-care providers. This is in large part due to the health-care provider’s discount of a woman’s verbal pain report and the medical profession’s over emphasis placed on biological pain contributors rather than emotional or psychosocial pain contributors.

Typically, a woman expresses her pain experience in emotional terms, often describing how her chronic pain negatively impacts her family and social life. She may even cry which leads the health care provider, due to old cultural and social perceptions, to assess that the pain is psychologically-based without any physiological basis. This is often the plight of women afflicted with chronic pain conditions such as fibromyalgia, reflex sympathetic dystrophy, pelvic pain and TMJ.

Last fall, a report in the Journal of Law, Medicine and Ethics titled “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” perfectly articulated and substantiated this endemic shortfall of pain treatment for women. It concluded, among other things, that “women’s pain reports are taken less seriously than men’s, and women receive less aggressive treatment than men for their pain.” Furthermore, an article in the New York Times (6/23/02) written by Nancy Wartik cited this report and exposed this ongoing medical scandal.

I, myself, have been an unfortunate victim of medical gender bias. My story began two decades ago when I was a 21-year-old ballerina with a very bright future. Then one day I suffered a minor ballet injury that quickly turned my storybook life into a living hell. For the first thirteen years of my illness (reflex sympathetic dystrophy), my doctors, predominately male, told me my physical problems were “all in my head” while the disease progressed throughout my entire body, eventually leaving me bedridden with chronic, intractable pain.

Despite my multiple symptoms (burning, stabbing, spreading pain, limb contractures, muscle tremors and atrophy, skin discoloration, etc.), my doctors condescendingly explained away my problems as psychological. I was told that I was suffering from stage-fright, enjoying the benefits of secondary gain, had “tendonitis from Mars”– one doctor told me I was contracting my limb with my mind just the way one levitates oneself! My medical experience is an excellent example of what women afflicted with chronic pain are often subjected to in the male-dominated medical community.

This type of treatment smacks of gender discrimination and must stop now. Women should no longer accept or tolerate second-rate treatment and condescending mind-sets which put them at risk of life-long disability or worse. The emotional and psychological traumas these practices exact are immeasurable and ultimately destructive to the spirit and soul of the sufferer.

“First, do no harm” is an oath a doctor takes as a pledge to patient care; however, harm, more often than not, is the result when it comes to treatment for women with their chronic pain diseases.

I have taken the liberty of drawing up a Women In Pain Bill of Rights to articulate what I see as essential demands for a woman suffering from chronic pain and the expectations she should have of her health care provider:

Women In Pain Bill of Rights

A woman in pain has the right to:

1) Have her self-report of pain taken seriously, without prejudice, bias or dismissal.

2) Express her pain experience in its fullest context in a way that is true to her nature.

3) Have her pain experience equally assessed to that of a man’s.

4) Not have her pain experience dismissed or discounted condescendingly as “all in her head”, “hysterical”, “hormonal”, “psychogenic”, “too emotional”, etc.

5) Have a free and open DIALOGUE with her physician about her pain experience and its impact on all aspects of her life.

6) Receive treatment that is consistent with current pain management standards.

7) Be treated by a physician enlightened to the fact that women and men experience pain differently.

8) Challenge her physician about diagnosis and prescribed treatments without fear of being labeled “hostile” or “difficult.”

9) Be treated in a clinical setting which understands and appreciates pain as a mind/body experience and accepts that emotional overlay (depression, anxiety, etc.), secondary to the organic cause, can adversely affect pain level.

10) Seek relief by whatever means is most effective, be it alternative, complimentary, traditional Western or by other treatment regiment.

Thousands upon thousands of women suffer needlessly on a daily basis due to the old attitudes and gender bias which permeate the medical establishment. These practices must end now before more harm comes to those who need help most.

Please sign this petition to support the spotlighting of this crucial healthcare issue and forward it to as many people as you can. All signatures and comments will be presented to media sources and politicians to help give this agenda the urgent attention it desperately needs.
Thank you for your time and much-needed signature of support,

Cynthia Toussaint
Vice President & Spokesperson, For Grace
A nonprofit organization dedicated to raising awareness of the chronic pain disease, Reflex Sympathetic Dystrophy